Hi has anyone experieced this condition due to there MS? I have been diagnosed with this after 7 days of headaches and eye pain curtently on a steroid drip for 3 days in hospital in absolute agony
@A MyMSTeam Member One other thing to note about NMO is the size of lesions in your spinal cord. If they cover multiple discs it’s highly likely it’s NOT MS because those lesions would be much smaller. Lesions for NMO can involve certain parts of brain as well as spinal cord. You might want to ask what sizes your lesions are or better yet, get a CD made so you can see for yourself. You just need to contact the center where imaging was done and request a copy, not necessary to ask Neurologist for a copy.
@A MyMSTeam Member I myself have RRMS and not NMO but a question came up last year that another member asked about it. I did a lot of online research, so that’s why I’m so knowledgeable about it; the research results were monumental because a number of patients didn’t know about what was being learned. I was especially concerned for fellow members if they had NMO and were still taking some sort of MS medication which can make the disease worse.
Typical size of NMO lesions cover an entire disc area and longer. My only MS lesion in spinal cord was 8 mm at C4 cervical spine. It has done pretty major damage as far as sensory goes, peripheral sensory neuropathy to be exact. The lesion itself has shrunk slightly and with it a small amount of volume loss has occurred as well. While normally a marker for disease progression, I’m actually able to do more things than less with the volume loss.
Last year I also found online new research findings that MS might stop attacking if you meet certain criteria which I do meet and could have even been a participant in a clinical study on it. The criteria are: 1) be over 55 years old, 2) have been taking same class of MS medication for over five years, and 3) not have any relapses in over five years.
I didn’t do the clinical study because I wanted to stop taking my MS medication and there was a possibility I’d have to keep taking it. So, as my update to my Story says, I voluntarily stopped taking Aubagio on 2/21/19 and haven’t had any problems with my MS so far; my annual brain and cervical spine MRIs in February will tell us if anything is going on.
I had that before I was first diagnosed. Had it for months and had seen other eye specialists who couldn't work out what the problem was! Then I couldn't walk so ended up in A&E. After the MRI and lumbar puncture they told me RRMS. Was a relief to know I wasn't going crazy but short lived as the enormity of what that diagnosis meant. Now I take each day as it comes.
Yes that's how mine lead to diagnosis. A neuro later told me if you have ON they are trying to rule out MS bc it's likely you have it.
@A MyMSTeam Member Hope the steroids are able to help you. You mentioned Optic Neuritis, which yes, I’ve had a dose of myself and 5-days of IV SoluMedrol steroids, outpatient though. Where exactly are your MS lesions, any covering multiple segments in your spinal cord? In other words, has NMO Neuromyelitis Optica been ruled out with the blood test for it? This used to be considered a part of MS but it’s really a disease all it’s own. Here’s a link to more information on it:
If it is NMO and not MS, currently there is no treatment for it and taking an MS medication might make it worse. That’s why it’s so important to rule it out when Optic Neuritis is involved.
We never share your personal information with anyone.